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Guest gillian502

I've been gluten-free for 11 months, and in some ways am still struggling. I can't say I feel "normal", I call it "the new normal" because I haven't felt the same in this body since going on this diet (in some ways better, others worse.) So there's really no going back, it's just what's normal for me now.

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Interests:Strengthening my relationship with Jesus Christ, my husband and kids, learning as much as I can about gluten intolerance and the gluten free lifestyle, and last, but not least, reading mystery novels.

For the most part my symptoms were gone within two months, now if I could just keep from getting contaminated occasionally, I would be much better all the time. It just seems like I keep getting into gluten everytime I leave town. I can only pack so much food. When we go out of town, we have to eat out. That is usually when I get sick...

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I've been on the diet between 1-2 months and I'm nowhere near "normal" yet, although I haven't been normal for so long I don't know how I'd measure it. But I have had a lot more energy and my digestive problems are slowly getting less severe and less frequent. I doubt I'll ever be "normal" since I've been incurring damage for most of my life. If I get to be half as bad as I used to be I'll be happy to have that, although wouldn't it be great to be completely healed?

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I've been on the diet between 1-2 months and I'm nowhere near "normal" yet, although I haven't been normal for so long I don't know how I'd measure it. But I have had a lot more energy and my digestive problems are slowly getting less severe and less frequent. I doubt I'll ever be "normal" since I've been incurring damage for most of my life. If I get to be half as bad as I used to be I'll be happy to have that, although wouldn't it be great to be completely healed?

I completely understand what you mean, catfish......I've been on the diet for....it'll be 5 months tomorrow. Like I said in an earlier post, I still have they symptoms. I had the abdominal pains, vomiting, some diarrhea, bloating, gas, low weight (not losing, but not really gaining)....the works . I always had a lot of energy so that hasn't been an issue. Diarrhea has never been a big deal and still isn't. It comes every now and then, but it isn't really frequent and it's not at all severe. My bloating stopped very quickly and I used to be very gassy...that's gone too. Although my less severe and less disruptive symptoms have disappeared, the abdominal pains and vomiting is....still there. It's much less severe and shorter in duration, but still comes just as frequently as it used to...usually every 10-14 days, but sometimes more frequently. Half as bad wouldn't be good enough for me ....I want so badly to not have to worry about getting sick.......it's really weighing emotionally. Anyway, I finished that ramble: I agree, it would be great to feel completely better. I haven't been that way since I was.....I guess 5 years old......

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It's hard. You start off in the beginning and go "this is impossible" or "this food stinks". Then you get into the groove...find good foods, really understand the diet and disease, and then it gets hard again...not following the diet, but dealing with the symptoms. I thought I'd be free in 2-3 months when I started. I was diagnosed in February, decided to "play it safe and limit dairy until school ended"....school ended a month ago and I know it will be another 4-7 months before I even think about introducing full-scale dairy into my diet...my idea is that I'll stay off until the symptoms go away for good...and then introduce it slowly. I still have some dairy in my diet....a fair amount, but not as much as I would otherwise...I just avoid obvious BIG dairy items like a bowl of ice cream, but am not cautious about other dairy sources....like butter and various muffins that contain it. Could that be slowing up my recovery? If it attributes to my sickness, does eliminating dairy just get rid of symptoms, or also help the healing time of the intestines themselves? The diet is nothing.........I can deal with this, no problem.......it's the symptoms. I used to wonder: is it only me? It's nice to know that others are dealing with the same thing -- or worse. I just hope that my symptoms heal enough before school starts....I have less than 2 months and 8th grade is a big year for me with applying out to a secondary school and a mandatory Shakespeare play which ties up many evenings.......wow, I hope symptoms get better by then..

-celiac3270

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celiac3270, my understanding is that the dairy may incur symptoms but does not cause physical damage to your intestines. Like you I avoid obvious main sources of dairy; hold the sour cream and no ice cream for me, thanks, but I don't worry about a little bit of butter in my mashed potatoes. I am prepared to have some symptoms from this now and again but it is not near as bad as it used to be for me when I was not gluten-free and I ate all the dairy I wanted.

For me this new diet was something like this;

First reaction, "This is impossible!" followed by, "Well, it might not be too bad if it makes me feel better". This led the way for, "Hey, I can get into this diet, it opens up all sorts of new food possibilities I never would have tried otherwise!" But then I found myself getting more and more cravings for foods I couldn't have, so I subconsciously started binging on stuff that was "OK" in order to compensate for the stuff I couldn't eat; things that would be alright for me like fruit or fried potatoes- but not in the quantities I was eating them! Variety is going to be the key for me, I think.

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I wasn't going to respond to this one because I am STILL not symptom free all the time, which is my idea of normal. Since I realize I've had various celiac symptoms all my life, but only started the gluten-free approach 3 months ago, I'm focussing on the most obvious symptoms that led me to suspect celiac disease and seek a diagnosis through Enterolab (which were abdominal bloating, cramping, pain, constipation and steatorrhea). Once I started the gluten-free diet my formerly excruciating pains became much more bearable, so I chose to go with E-lab diagnosis, rather than gluten load for a doctor's blood test/biopsy. However, here's my symptom resolution pattern:

When I first eliminated the obvious gluten (breads, pastries, pasta, etc.) my intense pain level went to tolerable, but other symptoms occurred after at least one meal daily. Then I eliminated less obvious sources (vitamins, toothpaste, envelopes, etc.) which reduced my symptoms even more, but I still experienced periodic symptom recurrence. Of course, I had slips (almost weekly) from cross contamination incidents, but the more gluten sources, I eliminated, the more I improved ... to a point. The more I eliminated gluten, the more I reacted to tiny amounts in slips. However, SOMETHING was still influencing my symptoms.

I had used 'lactaid' supplements for 10 years to consume dairy (after being misdiagnosed with IBS AND Lactose Intolerance)--that prevented excruciating pain right after I consumed dairy. When I first went gluten-free other celiacs told me that celiac damaged small intestines have difficulty digesting lactose, but after a year or so of healing using the gluten-free diet, perhaps I could again digest dairy. However I had also done the Enterolab test package which included a milk sensitivity test. I believed I already knew I was lactose intolerant, so I could just use lactaid to consume dairy. Meanwhile, I learned about CASEIN--the milk protein (vs. lactose, which is a milk sugar). Before my E-lab results came back, I wondered what I would eat/drink if my 'milk sensitivity test' came back positive, so I tried my own dairy free test. After 36 hours, my dramatic reaction to 'lactose free' milk convinced me that something else (besides lactose) was causing my symptoms. When my Enterolab results said 'casein antibodies' and autoimmune reaction to cow's milk, I realized I could not consume ANY foods with dairy ingredients, if I wanted to become symptom free. I actually did experience a SYMPTOM free day or two when gluten-free/CF. But then I tried to substitute SOY (milk, yogurt, margarine) for dairy. That brought back 2 of the symptoms I experienced with milk (cramping pain--just like menstrual cramps, but I'm 7 years beyond that ) and constipation. So I also don't tolerate soy. I'm not sure whether I just have difficulty digesting that now or I have a true autoimmune reaction. However, I've decided to just avoid for now whatever seems to cause ANY pain (which includes acidic fruits/vegies like raspberries/strawberries/tomatoes as well as soy). Since I HAVE experienced pain free days, so I know what that feels like, I'm motivated to do whatever it takes to heal.

I also agree with Catfish about VARIETY. When I went gluten-free I heavily indulged in my favorite lactose free (or lactaid aided) dairy products. When I began to avoid dairy, I went for lotsa soy (probably overloaded) because I didn't want to live without my favorite lattes, cereal and milk, ice cream and yogurt. Now that I'm avoiding soy and ALMOST painfree (I have little twinges occasionally), I really have to think about what I'll eat, to avoid getting into food ruts. I really depend on peanut butter and jam on gluten-free bread for breakfast, so I tried almond butter on rice cakes to break up the routine a little. I'm going to give almond milk on cereal a try before I completely give up the cereal and milk idea. However, when I take the time to prepare meals I can make various egg concoctions, lotsa varieties of meat/vegie/fruit/gluten-free grain dishes. I admit that being a lazy cook does limit my choices (as well as HATING hot foods on hot days), so I'm having to rethink my approach to food preparation, since I don't like to pay the price of most ready to eat packaged and prefer balanced meals (protein, carbs, fat and fiber) to 'smoothies', 'energy bars' 'high in carbs instant gluten-free meals). Thankfully, I can easily tolerate all nuts, eggs, meats, vegies, non acidic fruit and all gluten-free grains. I need to focus on all the choices I DO have, while avoiding what I can't eat (without having SYMPTOMS ). Nevertheless, I LOVE those hours/days when I'm symptom free.

BURDEE

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I went G F and symptoms went away immediately.Have stayed gluten-free but for the past 3 nights the symptoms have come back.There is no cross contamination.I do my own cooking,and do not eat anywhere but at home.I have been so very careful

and again I am so miserable.Can anything else be diagnosed as celiac disease?

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My experience was: when I first went gluten-free, I felt immediately better and had several pain free hours. Then with even the tiniest slip, I felt even worse than before. As I scrupulously gluten 'sleuthed' to eliminate all sources, I STILL had regular symptoms. Since I had done tests with Enterolab (which included a milk sensitivity test--although I used lactaid supplements for lactose), I wondered if I was sensitive to casein as well as lactose in milk. So I did my own dairy free test during which I was symptom free. When I tried a tiny bit of milk, I had pretty dramatic symptoms, which just confirmed my E-lab results of casein antibodies (as well as gluten antibodies). Then I substituted soy products (milk, yogurt, margarine) for dairy and experienced milder versions of my usual symptoms. So I'm now gluten free/dairy free and soy limited (tiny amounts in a canola based margarine are okay when I'm having an otherwise painfree day).

So other intolerances as well as gluten intolerance may cause similar symptoms. But if you did blood tests (regular lab) or stool specimum tests (E-lab) which indicated gluten antibodies/autoimmune reactions, you definitely have celiac, with other allergies/intolerances thrown in. I've read that the longer celiac goes undiagnosed, the more likely you can develop other allergies/intolerances.

BURDEE

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I have actually have a fairly good week for a change. I am still a pessimist and waiting for the honeymoon period to end . We are going to travel to Las Vegas and Laughlin in a few weeks and I am nervous. I don't want to get stuck in the hotel room. I guess I need to start contacting the hotel restaurants to find out what I can have. First year without a reuben sandwich from the Luxor deli.

Do the symptoms ever really go away or just become more manageable?

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I've been researching and came up with SIBO (small intestine bacterial overgrowth)....I made a post in this forum on it, but here's an article.........this could be why some of us aren't better...this article is from Celiac.com

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease See your ad here!

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You described me to a tee!!!! I am a mirror image celiac to you... Everything you have, I have, exactly.....

It is so embarrassing sometimes at work, my stomach is so loud everyone in the room can hear it! But they know me by now, and are quite supportive....

Did you ever try Immodium? If so, did you have any luck with it? I am giving it another try now that I have been gluten free (for 1 1/2 years) along with sugar free, dairy free, and caffeine free, I thought maybe the Immodium had a chance to work now. I just started taking it today, so I will let you know how it works...

My GI dr. screwed me up actually. He prescribed Lomotil to me for the diarrhea, and after two reactions after two different trys, I found out it contained gluten!!

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Guest jhmom

No I never tried the Immodium, did not want to have "more problems" if you know what I mean, but yes please let me know how it works for you. I also went caffenine free on the advice of my Rheumy, she thought it may have something to do with the diarrhea I had, but it didn't help but I remain caffenine free anyway

I have decided to see another GI doc (for a 3rd opinion) and maybe he can give me some answers. From what I have read I think I should be 100% better by now, I NEVER cheat (too afraid of the symptoms) and rarely do I have the cross contamination, my kitchen is 100% gluten-free and I don't eat out much. So maybe he can figure it all out and I will have some answers soon! I will let you know!

One thing I have been doing different is taking 1/2 tablet of Levbid, it seems to help with the abdominal pain but that's about it.

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!